The goal for all patients with inflammatory rheumatic disease (IRD) is to live a normal life without limitation in daily routine, including family planning and having children. Pregnancy counselling for these patients could be improved if better information on pregnancy outcomes and drug safety were available. However, robust data on pregnancies in women with IRD and on the safety of a substantial number of drugs taken before or during pregnancy are limited. Especially regarding rare outcomes or diseases, open questions can only be clarified by collaborative analysis of several databases. To foster joint approaches, pregnancy registers in France, Germany, Norway and Switzerland with prospective and multicentre data collection initiated the European Network of Pregnancy Registers in Rheumatology (EuNeP).
Project LeadR Fischer-Betz
The aim of this project was to bring together experts from across Europe who run pregnancy registers in rheumatology. Four European registers collaborate in the European Network of Pregnancy Registers in Rheumatology (EuNeP). Those registers are designed to collect information of patients with rheumatic diseases that wish to conceive, during and after pregnancy in order to gain more knowledge about how the rheumatic disease influences pregnancy and vice versa.
We have explored the structure of the collaborating registers, and how data is collected within registers. We have also collected information on the number and characteristics of patients with different rheumatic diseases enrolled in the registers so far. The exploration of the existing data was very important and a prerequisite for the project's aim to analyse data from different registers together. Building upon this, a so called “core data set” for registers and observational studies that collect data of pregnant women with rheumatic diseases was defined. The “core data set” is like a template containing a list of variables that should be collected in the same way by all pregnancy registers for rheumatic diseases. This will help to harmonize data across registers and make them more comparable to facilitate joint data analyses.
One of the analyses in our network was a collaborative analysis using data from all four registers. Data from pregnant women with axial spondyloarthritis were analysed. It was investigated, how many babies were born at term and how the health of these neonates was. In addition, disease activity during the course of pregnancy was investigated. Using the data of all four EuNeP registers together increased the strength of the results.